Tuesday, December 2, 2008

Life is short....


I want you to meet someone.  Her name is Nicole.  Not only is she a coworker of mine, who teaches across the hall from me, she is my friend.  When I got pregnant with Bailee, she shared with me her desire to give it one more shot, and try for a girl.  She already had three boys.  I told her she was nuts to already have three and consider even a fourth!  I could barely handle one. Well, about 3 1/2 months later..... she was pregnant.  It was great because we experienced pregnancy together for a few short months.  In December of 2007 little Greyson Morris was born. Oh, is he a cutie!  Yes, she was blessed with another boy.  A boy that would end up touching lives in ways only God knew at that point.....

Around the time that he was 6 months.....  Nicole started to become concerned because Greyson began losing some of the milestones he had achieved.  The doctors were also concerned and before they knew it..... all kinds of tests were being done.  From MRI's, CAT scans, spinal taps, blood work... you name it, he had it done.  MRI tests revealed a deterioration in white matter of the brain.  

Last week, they received the news.  Greyson has Krabbe's Disease.  It is not common.  1 in 100,000 children are born with it.  It is fatal.  The average expectancy is just short of two years old, for those that are diagnosed with infantile onset.  Greyson is deteriorating rapidly and they have given him 1-3 months to live.  The worst part.....  there is newborn screening for Krabbe's Disease.  And if caught early, the survival rate is good with cord blood transplant. Many infants have been saved with the transplant.  The disease affects the myelin sheath of the nervous system, which is the protective coating of nerves.  It causes severe deterioration of motor skills. At this point....  when Nicole brings him up to school for a visit.... he still gives you that oh so precious grin....  

Currently New York is the only state that requires Krabbe's Disease screening to be part of the newborn screening. Texas only screens for 29 out of 55 diseases!  The only reason New York now requires it, is because of Jim Kelly, a Pro Football Hall of Fame Member and former Buffalo Bills Quarterback.  His son Hunter fought a brave battle against this horrible disease. Please visit www.huntershope.org for the story on Hunter Kelly.  Also, www.krabbes.com is a great site.  

When the call from the doctor came with the diagnosis, it was Bill, Nicole's husband who received it.  He was told the news.  Because they had planned family portraits to be done the following day, he decided he would not tell his wife until after the portraits.  He knew that if he told her, she would not have gone through with the family portraits.  I commend Bill for that. They did take the family portraits and they turned out absolutely beautiful.  Nicole and I discussed today what an absolute treasure those photographs will be....  

Nicole's strength is amazing.  After seeing the portraits I could not stop bawling....  she cried right along with me.  I just can't fathom the pain that she is dealing with.  Knowing that you literally only have days left with your child.  Her strength comes from knowing that something good will come out of this and that Greyson will touch so many lives during his short time with us and continue to once in heaven.  She says it is so hard to watch him get frustrated because he can't move....  he wants to play around with his brothers and can't.    

I am joining them in their fight to make Krabbe's Disease a part of the required newborn screening.  No parent should have to endure the death of a child when it could have been caught and successfully treated as a newborn.  

Hospice is being called in.  They will help Greyson to be as comfortable as possible.  At this point, most nights he stays up all night screaming.  Hopefully they can provide him the comfort he needs.

I have a request......  I know we all are struggling financially....  trust me I know.  BUT, if at all possible I would like to collect Wal-Mart gift cards for the family or any other gift cards for that matter.  This way, they will be able to get gifts for the kids and get food for themselves and have a GREAT Christmas.....  any tiny bit counts....  if you are able to help, please email me at dunlap9499@gvtc.com or visit our school website at www.comalisd.org/District_Web_Site/ChMS/ChMS_Main.asp for our school mailing address. Please don't mention my name or this blog.  Also, please forward this post on to others....  the more the merrier.  I know I am being bold in asking this but this is an opportunity for us to pay it forward.  Also, please pray for the family and tonight as you put your kids to bed..... hold them a little longer..  give them that extra kiss.  Life is precious and so very short.

4 comments:

Lynn said...

Melanie told me about this, but I am still crying! I will send my prayers and I'll try to get you a gift card at church.

lkripp said...

Ok, I have cried my eyes out for this family....devastating. I would love to help. I can always drop a gift card by your house.

Anita said...

Texasmom......I found a link from Beth's blog and came to look. This is heartbreaking. I am so sad for your friend's family. I can't imagine that pain.
You are such a dear friend to reach out to help them.
Praying for their peace.

Kelley Holiday said...

This is all very sad. My first daughter died over 12 years ago and not a day goes by that I don't mourn. I feel for your friend and her family. She's lucky to have such a friend in you and your support and advocacy. I will keep them all in my thoughts and heart.

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